Community Commitment

Pharvaris is committed to strong collaboration with patient organizations, as well as with experts in the bradykinin-mediated angioedema (AE-BK) community, and supports the work undertaken on behalf of those living with AE-BK.

resources

For more support and resources please visit:

We invite healthcare professionals and those living with hereditary angioedema (HAE) to explore Pharvaris’ deflateHAE where real stories and insights highlight what living with HAE can be like.

Living with bradykinin-mediated angioedema (AE-BK)

Living with AE-BK can mean living with attacks that are unpredictable in frequency, location, timing, duration, and severity, imposing significant burden on emotional and physical wellbeing. AE-BK can affect all genders, ages, and ethnic groups.

Attack Characteristics^1-18

Approximately half of patients with HAE may experience an attack before the age of 10
Attacks may be preceded by skin tightness or tingling or a non-raised rash
Extremity attacks may be painful and interfere with daily functions e.g., difficulty wearing shoes or with fine motor skills
Attacks can vary in location from person to person and from attack to attack, including:
- Face
- Hands and arms
- Genitals and buttocks
- Throat/upper airways
- Abdomen
- Feet and legs
Abdominal attacks may cause nausea, vomiting and/or diarrhea and may last days, if not treated, and can result in hospitalization
Attacks located in the face and neck may become disfiguring and disabling, e.g., lips may become too swollen to eat, and obstruct the upper airways, making it difficult to breathe. In the worst case, an upper airway attack can be fatal.

Social Impact^{9,11,21,25-29}

Children with AE-BK can experience alienation from peers, missing out on activities with their peers, and challenges in school attendance and educational attainment
Adolescents report higher anxiety, attack treatment delays, and a greater impact on health-related quality of life compared to adults
Adults report avoiding social events out of fear of having an attack in public and fear of navigating the negative attention of onlookers during an attack

Occupational Burden^6,9,10,30

People living with AE-BK who reported a higher frequency of attacks over the previous 6 months presented with worse health-related quality of life and worse work productivity than those with less frequent attacks
Those with AE-BK may have perceived limitations of available jobs and lack of career advancement
They may fear being seen as undependable and unproductive by coworkers

Due to its rarity and overlap of symptoms with other conditions, AE-BK can be frequently under-recognized and/or misdiagnosed, especially in cases without family history.^31,32

How common is bradykinin-mediated angioedema?^33-38

HAE is a rare disease that is estimated to impact 1 in approximately 50,000 people:

USA ~7,000

Europe ~15,000

Acquired angioedema due to C1INH deficiency (AAE-C1INH) is an ultra-rare disease that is estimated to impact approximately 1 in 500,000 people:

USA ~700 people

Europe ~1,500 people

References

1. Bork K, et al. Am J Med. 2006;119:267-274; 2. Frank MM. eMedicine. July 2025. Accessed June, 2026. http://www.emedicine.com/med/topic420.htm; 3. Longhurst HJ and Cicardi M. Lancet. 2012;379:474-481; 4. Lumry WR, et al. Allergy Asthma Proc. 2010;31:407-414; 5. Bork K, et al. Am J Gastroenterol. 2006;101:619-627; 6. Mendivil J, et al. Orphanet J Rare Dis. 2021;16(1):94. 7. Frank, Immunol Allergy Clin North Am. 2006;26(4):653-668; 8. de Lange M et al. J Allergy Clin Immunol. 2025; 9. Longhurst et al., Clin Rev Allergy Immunol. 2016;51(2):230-239; 10. Banerji A, et al. Ann Allergy Asthma Immunol. 2020;124:600-607; 11. Lumry WR et al. Allergy Asthma Proc. 2020; 12. Riedl MA et al. Allergy Asthma Proc. 2021; 13. de Lange M et al. Front Immunol. 2026; 14. Busse PJ et al. J Allergy Clin Immunol Pract. 2022;10(3):716-722; 15. Maurer M, et al. Allergy. 2022;77:1961-1990; 16. Betschel S et al. Allergy Asthma Clin Immunol. 2026;28;22(1):24; 17. Vazquez DO et al. World Allergy Organ J. 2026; 18. Lumry WR. Am J Manag Care. 2013;19:S103-S110; 19. Farkas H, et al. Allergy. 2017;72:300-313; 20. Longhurst HJ and Bork K. Br J Hosp Med. 2019;80(7):391-398; 21. Savarese L, et al. Allergy Asthma Proc. 2021;42(1):e1-e7; 22. Zotter Z, et al. Orphanet J Rare Dis. 2014:9:44; 23. Caballero T, et al. J Invest Allergol Clin Immunol. 2016;26:383-386; 24. Huang SW. Allergy and Asthma Proc. 2004;25(2):127-131; 25. Johnston DT and Smith RC. Allergy Asthma Proc. 2020;41:S43-S46; 26. Pagnier A, et al. Pediatr Allergy Immunol. 2024;35(12):e14268; 27. Busse P, et al. Presented at: Western Society of Allergy, Asthma, and Immunology (WSAAI) Annual Meeting 2024; February 4-8, 2024; Koloa, HI, USA; 28. Lo SH, et al. Pharmacoecon Open. 2022;6(2):231-239; 29. Anderson J, et al. Allergy Asthma Clin Immunol. 2021;17(1):60;9; 30. Food and Drug Administration. The voice of the patient - Hereditary angioedema. Published May 2018. Accessed Jun, 2026. https://www.fda.gov/files/about%20fda/published/The-Voice-of-the-Patient---Hereditary-Angioedema.pdf; 31. Zanichelli A, et al. Ann Allergy Asthma Immunol. 2016;117:394-398; 32. Magerl M, et al. Clin Transl Allergy. 2023;13(9):e12297; 33. Maurer M, et al. Allergy. 2022;77:1961-1990; 34. Riedl MA, et al. J Allergy Clin Immunol Pract. 2023;11(8):2450-2456.e6; 35. Zuraw BL, et al. Clin Rev Allergy Immunol. 2025;68(1):24; 36. Sylvestre S, et al. J Allergy Clin Immunol Pract. 2021;9(12):4441-4449.e2; 37. Betschel S, et al. Allergy Asthma Clin Immunol. 2019;15:72; 38. Worldometer. Population. Accessed Aug 18, 2025. https://www.worldometers.info/population/